Mood:
celebratoryNow Playing: Day 719-The Final Road To Survival
No sleep for those in pain so instead of tossing and turning then looking at my cell phone alarm I decided to just get up and make it a productive day!
Littleblue has become our new alarm. Once she is ready to wake up she gets everyone up. Her new thing is to stand on the couch or floor and stare at you with her tail slowly wagging. She teases my friend-Caregiver pretending like she has to go outside but really she just wants him to wake up! Hahahahaha! She sure is one smart fur kid!
The weather outside is perfect today! I love fall weather and today it is only suppose to reach a high of 67 degrees. It was a great day to let Oreo and Littleblue outside to play. My friend-Caregiver enjoys playing frisbee with Littleblue and sometimes she brings us her frisbee in the house when shes ready to play catch. I am doing my best to keep gravity on my side while utilizing the cane and crutches. On a good day with plenty of rest is far easier than days like today with limited sleep which means not much energy. Darn, I remember back in the day in school when I had to use crutches and it seemed so much easier! Now after just 30 minutes I feel like I completed a high impact workout. My specialists are hoping with time it will get easier and I sure hope they are right!
After six phone calls the kitchen cabinet full of post it notes slowly dwindled down to just three. One is for my tests and doctors appointment Friday, one for a meeting tomorrow early afternoon and the other is for hopefully my LAST doctors appointment next week so I can at least take a little bit of a break. Hell-In-A-Jug day is right around the corner as I am advised to go back on a strict liquid diet. WATCH OUT WORLD! This means my irritability will be in full swing! Hahahahaha! I would love to stick a few people I know on the full liquid diet just for the learning experience. Might help them to see how it finally feels living a Gastroparesis life.
I forgot last week to mention the status of the Greyhounds up north. I am extremely happy to say a local city Greyhound rescue group is working very closely now with the owners as well the county. They will be providing better shelter, more land for the Greyhounds to run and proper care for the ones who are sick. Help doesn't come to humans or wildlife when you are silent and I am so happy to hear things will finally be better for the beloved Greyhounds. Hard work truly does pay off! Amen! I ask people why they have deer heads on their walls. They always say because it's such a beautiful animal. There you go. I think my mother is attractive, but I have photographs of her. ~Ellen DeGeneres
sharp
This is getting old!!!! I feel like I have plenty more patience to give but sometimes one pain affects you completely different than the others when its in your tailbone area and wraps around your entire leg. I can't sleep on my left side, I can't sleep on my back and I can't sleep on my right side unless I continue to hang my left leg over the couch or rest it on the step stool. The living room is once again looking like a make shift medical supply store. Hahahahaha! Add crutches now to the mix. Whether I like it or not I must admit keeping weight off my left leg and spine is a heck of a lot better than constantly enduring the stabbing hot nerve pain! The wheelchair is a great idea but its still uncomfortable to find a position that doesn't make things worse.
With not much sleep last night I still managed to get up once my cell phone alarm went off at 1pm. 1pm to most is a time you wake up during vacation but trust me being sick and disabled is NO VACATION by any means. Its exhausting but far from fun. Amen! I had post it note reminders waiting for me once I got up and I wanted to try getting through most of them before my Neurologist-Neurosurgeon appointment later this afternoon. This week and next week I like to call "Hell Weeks" but I must keep in mind all bad things eventually do come to an end. My friend Kevin always makes sure I keep those exact words in mind when having a stressful day. 
So we left my specialists office with exactly as expected-more information and medical education. Maybe not a cure or a magic pill but remember I am the type of person who does better "in the know" than the "unknown." Since I still have quite a few tests and doctors appointments over the next few weeks they will wait to see what things show and then my team of amazing specialists will take things from there. Its a very strong possibility there isn't anything further they can do but try to manage the pain. I am looking at a 90% possibility. If only my tired body wasn't so tired they could discuss surgical options but those are out of the question so for now I continue to take things one day at a time.
lazy
With two specialist appointments lined up this week on top of other things that must get done I am already feeling mentally exhausted. Its one thing to be physically exhausted but a completely different situation having both at the same time. I didn't get much sleep last night due to nerve pain making its way around my left leg. Luckily my Neurologist-Neurosurgeon decided to bump up my appointment so I see him tomorrow. He totally understands the nerve pain I am experiencing but needs to make sure I continue having proper blood flow to my leg. This afternoon I did my best utilizing the crutches and although it did help a bit with the lower spinal pain it also was tiring as heck so I quickly gave up and resorted back to my cane. 
Last night we had some wicked storms and once again the summer like temperatures have made their way back. The constant change in season is starting to effect all of us so we decided to have a very lazy evening...My friend-Caregiver's allergies are finally getting to him so he is even utilizing wearing masks outside. The grass grew back in a matter of days so once again it will need to be cut. Masks work great but not 100%. I have a hunch it will be a restless night of sleep for him tomorrow and a very exhausting week for me.
"Man - a creature made at the end of the week's work when God was tired."
cheeky
Wow! We are going on the fourth month of the year 2012 and honestly I can't even keep my days straight anymore. Hahahahaha! I thought today was Monday and asked my friend-Caregiver once we got up mid afternoon if he got the mail yet. Ummm...Its Sunday not Monday. OOPS! My days just blend together anymore same with it being April 1st when I was just getting used to it being March. 
So in between preaching visitors when least expected popping up on a weekly basis around the neighborhood we now have another church wanting to build parking lots outside our backyards. Some neighbors have told us the best way to counteract the behavior of religion gone bad is:
I have cleaned up letters, note cards, pamphlets, etc over the past few months that now I might just get some Gastroparesis Awareness Campaign gear together and educate them on true suffering. Amen.
Hee,hee,hee,hee,hee... 
d'oh
It's amazing that even I quickly forget in a blink of an eye that ummmm...MY GI TRACT DOESN'T WORK! DUH! Tell that to Uncle Ben who happens to be the most wicked Uncle I have ever come across! Three spoonfuls and that's all she wrote folks and if this box of rice looks huge next to this kid imagine how HUGE it feels right now in my stomach. UGGGG....
I won the "GAME OF LIFE!" WOOHOA! Its about the only game of life I am winning, hahahahahaha! If only our lives were as easy as the game huh? 
Oreo and Littleblue sure have been loving this weather and playing outside however things are about to once again change with more rain. GEES! Just when the ground was finally dry so looks like they will be taking a break from outdoor fun and instead have to be happy with short walks to the park across the street. Oreo is doing much, much better with his seizures. He still gets them from time to time so its important to keep stress at the house to a minimum. I think we both could really benefit from it! Amen.
A dear fellow GP friend of mine named Jennifer sent me a really, really funny and cute card about doctors today as well a beautiful bouquet of my favorite flower-sunflowers in various colors! Thank you so much Jennifer it was a huge surprise and you certainly had the right flower, love them! Its so nice to have my GP family and all their inspiration that helps to keep me motivated. Now I can wake up next to my couchbed and look at the colorful sunflowers and the best part is they smell great too!
I woke up around 2:30pm today feeling extremely dizzy and cold. This could only to me mean one thing. Either my blood pressure was once again running a bit too low or it is my blood sugar. I carefully got my leg up and moved it off the couch then stumbled into the kitchen to test my blood sugar level. Sure enough! way, way too low and no wonder I am feeling horrible. The sugar rush begins once again so between candy, glucose tablets and gel I was finally able to get my sugar level back up to a safer range.
We both came upon the most sweetest thing in the world walking around the park when an elderly couple was sitting on the park bench as the husband was reading a book to his wife. We both couldn't help but smile from ear to ear. Its rare moments like this in life when one realizes the small things that matter the most. In a world where you meet and see thousands of people it only takes one instant to truly touch your heart.
This one was perfect and is called, "Expect Miracles" along with a beautiful stone plaque to place near my Bible in the living room. Thank you so much Arline, you made my day!
Amen.
rushed
My doctor totally understood the concern with my kidneys not functioning properly although the key is I don't have any infections going on with my kidneys. The problem I have is once again with nerve damage which allows my organs much like my kidneys to function properly. After speaking to a few other specialists of mine the past few days I agreed with my doctor that there isn't anything they can do and I am fortunate everything that was found by accident on the catscan is in the "beginning stages." WHEW! They can't nor will anyone do any type of surgery. My friend-Caregiver said, "If they found a bullet inside you right now they still won't do surgery." Very, very true because my chances of coming out of the surgery room are very slim and recovering from surgery even worse. My doctors decided that right now I need to understand they can't repair damaged nerves that are causing my organs to not work properly so honestly whats the sense of adding another specialist? If I develop a kidney infection or infections that is a different story but even a Nephrologist can't restart damaged and dying nerves. 
In between leaving one doctors appointment and heading straight to another we stopped by the pharmacy to drop off my prescriptions. I also called my GYN-Surgeon and they scheduled a ultrasound for next week to look at my problem ovary. This is the same ovary they had horrible problems with during my last nightmare surgery. Will they do anything with the ovary even after more testing? 95%-No. It is important to my other specialists to get the scan done in order to keep them updated so they can all work together with my care and managing the pain? Yes. My Oncologist-Hematologist will be gathering all the information he needs and I will be seeing him also next week. I am glad to divide up all these doctor visits over a two week period seeing I am already mentally and physically tired! My other doctors appointment today went as expected. My friend-Caregiver even said on our way out of my doctors office that sometimes you just feel better confirming what you already know to be true. Story of my life! Hahahaha!
Today I found my silver lining once again among the clouds. Amen.
hug me
Its been a week since my spine decided to shift and POOF! things forever changed. This also means things have forever changed with what my life used to be like including normal daily activities. Forget that new bike to ride this spring and fall. Forget wearing all the cute spring and summer sandals with any sort of heel. Forget having a 'me' day playing my own manicurist. Forget putting on my own shoes without finding a creative way to put them on myself. Now taking a shower and shaving my legs is a huge feat! I was told by my Neurosurgeon/Neurologist that the damage to my spine is done. They can not help nor fix the problem. The numbness that started at the top of my left leg has extended to my knee. There are times I am finding myself having to pick my leg up from the nerves dying but guess what? Deal with it! I only say this because things are not going to change and either I cry and act like a big baby or suck it up and act like a big girl! I chose the latter of the two. Hahahahaha! My friend-Caregiver is even getting a bit creative in order to help me sleep on the couchbed and recliner. Since the spinal damage is now predominately worse on the left side I must hang my hip and left leg over the couch or chair in order to ease the sharp nerve pain. This involves using a step stool with two chairs for elevating my hip/leg or using a chair and tube socks tied to create a sling to rest my leg. Maybe we are onto our own self home medical equipment store! Hahahaha!
My Oncologist/Hematologist has the job of taking over my troubled lymph nodes-two different sets that are working against me which are connected and related to those who have Lymphoma/Leukemia. My other specialists will not touch this new problem area and rightfully so until my Oncologist/Hematologist passes my care back to them. Not that I don't blame them. Its called, "Liability." Most feel over 14 specialists is a lot or too many but after many years it is proof that Gastroparesis invades various organs as it continues its path of destruction. Each specialist has an organ that he/she manages and treats when symptoms arise. They all work as a team and today they worked once again very quickly as they exchange notes and stay on top of things. My Psychologist will also be helping to continue keeping my attitude in check and spirits high in order to not allow this new list of problems to suck me down a never ending hole. Amen.
New problems mean new challenges. The new diet has been tough and I was never one for yogurt so my friend-Caregiver picked up some new frozen yogurt flavors today. The masks are hard to get used to and I sometimes forget to put one on before I walk outside but keeping my immune system safe is a must! Same with the darn cane that is already hurting the palm of my hand. If I could have a house that is one level with an open floor plan and the washer/dryer upstairs things would also be a million times easier. Little things you realize are important but only after life changes and you are faced with a new set of medical rules.
blue
I am so so so so so so so so tired of the stress! 